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What are the four values of life?

Keywords Values. Virtues. Fairness. Respect. Care. Honesty.

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Fairness

The terms “fairness”, “justice” and “equity” are often used interchangeably. The TRUST consortium chose the term “fairness” in the belief that it would be the most widely understood globally. Philosophers commonly distinguish between four types of fairness (Pogge 2006) (see Fig. 3.2). The most relevant fairness concepts in global research ethics are fairness in exchange and corrective fairness. In global collaborations, at least two parties are involved in a range of transactions. Typical fairness issues between partners from high-income countries (HICs) and those from low- and middle-income countries (LMICs) are:

Is the research relevant to local research needs?

Will benefit sharing take place?

Are authors from LMICs involved in publications?

These are questions about fairness in exchange. For instance, LMIC research participants contribute to the progress of science, but this is only fair if the research is relevant to their own community or if other benefits are received where this is not possible. For instance, to carry the burden of a clinical study is only worthwhile for a community if the disease under investigation occurs locally and the end product will become available locally. Corrective fairness, which presupposes the availability of legal instruments and access to mechanisms to right a wrong (e.g. a complaints procedure , a court, an ethics committee ) is also important in global research collaborations. For instance, if no host country research ethics structure exists, corrective fairness is limited to the research ethics structure in the HIC , which may not have the capacity to make culturally sensitive decisions. The broader question of what HICs owe LMICs falls under distributive fairness. One can illustrate the difference between fairness in exchange and distributive fairness using the example of post-study access to successfully tested drugs. In the first case (fairness in exchange) one could argue that research participants have contributed to the marketing of a particular drug and are therefore owed post-study access to it (should they need the drug to promote their health and wellbeing, and should they not otherwise have access to it). In the second case (distributive fairness) one could provide a range of arguments, for instance being a signatory to the Universal Declaration of Human Rights (UN 1948) , to maintain that all human beings who need the drug should have access to it, and not just the research participants . These wider fairness issues cannot be resolved by researchers and are therefore not directly included in the GCC. Likewise, retributive fairness is less relevant as few ethics violations fall under the punitive and criminal law, and if they do, it is indeed criminal law that should be used to deal with a fairness violation.

Respect

The term “respect” is used in many ethics frameworks. For instance, the Declaration of Helsinki (WMA 2013) notes in article 7: Medical research is subject to ethical standards that promote and ensure respect for all human subjects and protect their health and rights. (emphasis added) Its ubiquitous use does not, however, mean that “respect” is a clear term. In everyday life, it is used in the sense of deep admiration. For instance, somebody could say, “I respect the achievements of Nelson Mandela”. However, that is not what is meant by respect in research ethics . The statement from the Declaration of Helsinki does not mean that research participants must be admired. To be respected in research ethics is almost the opposite. It means that one must accept a decision or a way of approaching a matter, even if one disagrees strongly. A case in point would be respecting the decision of a competent adult Jehovah’s Witness to refuse a blood transfusion for reasons of religious belief, even if this means certain death. Respect is therefore a difficult value, as there will be cases where one cannot accept another’s decision. For instance, if a researcher learns about female genital mutilation being used as a “cure” for diarrhoea in female babies (Luc and Altare 2018), respecting this approach to health care is likely to be the wrong decision – particularly as the practice is probably illegal . But the fact that respect may be difficult to operationalize in global research collaborations does not mean that it is a value one can dispense with.

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There are many possible ways of showing respect that do not create conflicts of conscience. For instance, illiterate San community members should not be enrolled in research studies unless San leaders have been contacted first, in accordance with community systems. And researchers from HICs should not insist that LMIC ethics committees accept the format of the researchers’ preferred ethics approval submission; instead the HIC researchers should submit the study for approval in the format required by the LMIC committee. This shows respect in international collaborative research. While it may be difficult to imagine a situation where an HIC researcher is accused of being too fair, too honest or too caring, it is possible to be accused of being “too respectful” – for instance, if one tolerates major violations of human rights. It is indeed sometimes difficult to strike a balance between dogmatically imposing one’s own approach and carelessly accepting human rights violations, but that is the balance researchers should strive for.

Care

Sometimes one word describes different concepts. This is the case with “care”. The statement, “I care for my grandfather,” can mean two diametrically opposed things. First, it could mean that the person is very attached to her grandfather even though she hardly ever sees him. Second, it could mean that she is the person who injects her grandfather with insulin, cooks his meals, and makes sure that his needs are taken care of every day, even if there is antipathy between them. The meaning of the value of care in the context of global research ethics links more to the second use of the term; to look after or take care of somebody or something. As a main priority, one should take care of the interests of those enrolled in research studies to the extent that one always prioritizes their welfare over any other goals – for example, accepting the decisions of those who choose to withdraw from an ongoing study, even if this impairs the project’s results. In line with article 8 of the Declaration of Helsinki (WMA 2013) that means: While the primary purpose of medical research is to generate new knowledge, this goal can never take precedence over the rights and interests of individual research subjects. This care applies across disciplines, not only in medical research , and it is not restricted to human research participants . Article 21 of the Declaration of Helsinki (WMA 2013) extends the care for research subjects’ welfare to research animals. Likewise, care for environmental protection is increasingly included in research ethics processes and frameworks for responsible research. For instance, the European Commission’s Horizon 2020 ethics review process addresses potentially negative impacts on the environment (Directorate General for Research 2019: section 7). Richard Owen et al. (2013) define responsible research and innovation as “a collective commitment of care for the future through responsive stewardship of science and innovation in the present”, a statement that has clear relevance to environmental protection. Researchers who take care to avoid negative impacts in their work will not “helicopter ” in and out of a research area they are not familiar with, but will use systems of due diligence to ensure that risks are assessed and mitigated . For instance, an HIC research team that strips a local area of all doctors and nurses by attracting them into their high-tech research facility is not acting carefully and ethically.

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Ideally, researchers who take good care will combine the two concepts mentioned above: they care about research participants , in the sense that the participants are important to them, and they feel responsible for the welfare and interests of those who contribute to their research, or might suffer as a result of it (including animals and the environment).

Honesty

Honesty is a value that does not need complicated explanations or definitions. In all cultures and nations, “Do not lie” is a basic prerequisite for ethical human interaction. It is so basic a value that its synonyms are often broad ethics terms. For instance, according to Google (2018), synonyms for “honesty” are: moral correctness, uprightness, honourableness, honour, integrity , morals, morality, ethics, principle, (high) principles , nobility, righteousness, rectitude, right-mindedness, upstandingness What does need explaining, however, is the scope of the value of honesty in the context of global research ethics . Telling lies is only one possible wrongdoing in the context of a broad understanding of honesty. For instance, in research ethics it is equally unacceptable to leave out salient features from an informed consent process. While this might, strictly speaking, not involve a lie, concealing important information that might make a difference to someone’s consent violates the value of honesty as much as lying. For this reason, research ethicists often use the terms “transparency ” and “open communication ” to ensure that all relevant information is provided so that research participants can make an informed choice about whether to participate or not. In addition to lying and withholding information, there are other ways of being dishonest, in the sense of not communicating openly and transparently. For instance, in a vulnerable population with high levels of illiteracy, it can be predicted that a printed information sheet about research will not achieve informed consent . The same can be said for a conscious failure to overcome language barriers in a meaningful way: leaving highly technical English terms untranslated in information sheets can easily lead to misunderstandings. Honesty is also related to research conduct other than interaction with research participants . Most prominently, the duties of honesty are described in research integrity frameworks: do not manipulate your data , do not put your name onto publications to which you have not contributed, do not waste research funds, to give only three examples. However, while the latter prescriptions for conduct with integrity in research are important, they are not directly linked to exploitation in global research collaboration and are not covered in the GCC. In this context, the European Code of Conduct for Research Integrity (ALLEA, 2017) is very helpful.

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